Home, thoughts and requests

An update is due as I am home, and the words have wanted to flow, I simply haven’t wanted to stop for a minute though to write. Too much needed my attention. My son, my love, my life, my home, me. I am home. Though, Los Angeles treats me well, and I truly, truly enjoyed my time there, but now, I am home. Home to the house on the lake where I can cuddle up with my boys and not mind the rainy days. Hobble down 42 steps to our sanctuary and be okay with not wanting to leave. The hardest part of being home, and please don’t take this the wrong way, are the questions and calls from people checking in and wanting this information. My first week home, I just wanted to see my son and husband. I’m not sure why that was difficult for some to grasp, in all honesty, the contact from those who aren’t apart of my everyday life, seemed a trespass. Something I am working on….letting people care and it be okay. It is odd and difficult having people around always. Always! So, there are those of you who are incredibly thoughtful of my process, who connect remotely, with a simple text and let me be if I don’t answer, and I thank you. Now that I am settled in with a bit of space between LA and home, I can come up for air, enjoy my visitors, friends and family who rally around to help and offer some sort of update, though I don’t have much to tell. In all honesty, it is a challenge being home. Life in LA was easy, restful, and healing. Having the time to myself was needed. Being home, it is apparent how hard things can be; I am immobile and I am responsible for a little one. My pain in the right hip has gotten worse and my walk has altered. I am unable to drive myself around, so now we need two sets of hands, help with Milo and help with carting me to the numerous appointments that maintain and shape my life. This means that there are always people around, and this has been the most difficult part of the cancer process: navigating the waters of schedule, people and their needs, and keeping Milo tuned into his parents, rather than his caregivers.

The request, Stop Asking Questions, please.
I love everyone, and wouldn’t want to go this alone, couldn’t, I am so blessed with my champions who assist me. This is not what is difficult about home. It is the questions. I’m not sure why the answers are needed while I have none, or when I have this blog….can you not read what it is I want to tell? Here you go… This is all I have. This is the update. I have cancer, I don’t know when it’s going away. I have a lot of pain right now. The new routine is that I go to LA to get help with a new set of drugs, a new set of eyes and ears and I feel like things are working. I feel great about this new treatment, but that’s all I know, it will have to be enough because right now, I want to spend time with my son, and help him understand why my boo-boo has not gone bye-bye though I am home from said healing. My energy is taxed, I can barely walk, let alone explain away the intricacies of metastasized rare cancers and study drugs. I truly appreciate the love and the want to ensure I am on the road to recovery, but again I only know what I share, the daily ‘how are you’s?’ seem to serve as a reminder that I am in pain. I know you don’t know this, so I am sharing this now. While I am on the subject and using this as informative posting, the hours between 5pm and 7pm are for Milo’s dinner, play and bedtime, time as a family. It seems everyone wants to catch up then. It must be on one’s way home from work time or something, but you all call and text at the exact same time. (Otherwise, I wouldn’t bother expressing, but the phone goes crazy with the beeping, and I keep it on for doctors and such). I am occupied and move at a snails pace as written, as earlier posts state, so I am off line and off of the phone. I love you all and will be truly updating soon. Scans are Monday (Wish us luck this drug is working!). Update at the end of the week. I will be in LA for appointments and the drug pick up, I will be home in a few days, so there isn’t a need for checking in before I leave or return. Many thanks…

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Cheri Pearl Photography http://www.cheripearl.com/blog/

The Smile Box

I’m not sure why I still am surprised at the capacity of how amazingly supportive everyone can be, but I am, and it needs telling, over and over. The way in which the production of love jumps to my side, in all walks and shapes and ages, is astonishing.

The Smile Box came in a package from a coworker of my husbands. Her and her most lovely daughter filled a beautiful glass box for me with true and creative little “smiles” in the form of mostly shrinky dinks (which is the absolute best thing in the world!) and little tokens of love. Accompanied by small metal hearts, a pretty rock, a seashell, a fortune, was a big old handful of small shrinky dinks emblazoned with words of love, Milo’s name, flowers, coffee cups, and even a tiny bottle of wine! The list of little treasures goes on and the best part of this incredible gift of smiles is that it made for a most precious game for Milo and I when he visited. We carefully unwrapped the gift together, explaining that our friends made this to help me feel better. What a playful time he and I had, looking at each piece as he decided that because this is for my boo-boo, they all needed to go in my boo-boo. He looked at each treasure and placed them on top of my chest where the port lives (Milo thinks this is the boo-boo site) and kept putting the little pieces down my shirt. A first it was a struggle to fight back the tears at how sweet and scary and sad this felt but once we powered through watching such an excited display, it was the most amazing game ever! The Smile Box was both literally and figuratively packed with stunning love, and of course, smiles 🙂

The Smile Box is now a term I think I will use for these magical gifts, encounters, and support that I find along this course I am on. I’m usually not this sort of cutie with my words but smiles are abound, so I’ll take the cue and add it to my list of idioms.

So yesterday afternoon, at the spurring of my dear friend, we wandered around the Los Angeles County Museum of Art, he guided me in a wheelchair, a big step for me, and I had the most amazing afternoon. It was, indeed, a smile box full. In more ways than one, the day was simply bright. I gazed upon incredible art, of which it has been two years since I have stepped into a museum (too long for me) while having a day with a most amazing friend whom I rarely get to see. We laughed and cried and discussed life, art, love and the fears of mathematical equations. At the end of my road, he got the car while I slowly hobbled from wheelchair to a faraway curb when another smile box emerged. Sedrick and Miss Lady. Miss Lady was a beautiful dog of which I complimented, she nuzzled my leg and her owner, Sedrick, a tall gentle, young man told me that I was going to be okay. He knew it. His mother had cancer, he had asked if my leg was okay as I had my cane and extremely slow gait, but he knew I had cancer. He didn’t want to pry but he expressed that I reminded him of his mother, my poise and my spirit alighted something within him that he wanted to share. He was gentle with his words, yet confident that something needed telling. He knew that I was going to get through this, he expressed assuredly. He said that I was in the right place, that she (his mother) beat hers swiftly and though mine may be different, he just knew. I said, you know, I think you are right. I told him how I, of course, missed my family, but I know this is where I am supposed to be and thanked him for sharing in my beliefs and that this positive way of thinking is the only way. He kept on telling me about his mother, his sadness on being far from her, his emotions surrounding her illness. He was an angel that wanted to share his love with me and embraced me with his words. And well, it just so happened he was from New York too! A dark, lovely angel from Harlem opened his heart to me on the sidewalk of LACMA. He walked me the whole way to the curb, to my friend and in these moments I wonder how we can part from such people. I won’t see this man again and part of me is saddened by that, but I know that is the way life is supposed to be, we have encounters, smiles, and he will go home and call his mother and I will carry that moment forever in my heart. All for the spurring of learning to use a tool when I need one, loving my day with my dear friend, and meeting Sedrick and Miss Lady; I opened a very big Smile Box.

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Heroes

I am not the heroine of this story, there are many, he is my hero today, everyday. They both are, my two loves, Milo and Karl. I learned this ever more presently this past weekend, during a storied visit. Though very much under the weather and not the ideal situation for our reunion, we embraced every minute we had with such an abundance of love, it is and was astounding.

The arrival day, of course, couldn’t get here with enough swiftness. I had had a five hour appointment at the clinic for this chemotherapy drug study. And as they flew to see Mamma, I had my port accessed, blood drawn three times, EKG’s, two skin biopsies, coupled with doctor and nurse visits throughout a full day. As they flew, I was at work healing with a giant, excited smile all day long, of which I am sure my partners in chemo jail crime must have thought was insane. We, my inmates and I, spoke of my son, of hers, of screenplays (because it’s LA), and side effects while they traveled, while he slept in his arms and peered out of the window into the sky searching for Mamma.

They were headed straight for me from the airport, it was quiet, at the end of the day and I was on my last nurse visit when they arrived. I heard from Chanel, one of the nurses, is that your baby looking for you!? I could feel my smile get brighter and hear the coos from the clinic. It was unbearable that I couldn’t run to him, my gait is at a snail’s pace with intense pain, yet my heart leapt immediately to him, as I watched him peer around the nurses station looking for Mamma. Each nurse seemed to be lined up watching us, patients still in their chairs, listening, my sister’s friend, who had been beside me the entire day, and my husband, all of them watching with tears streaming at this little one who just wants his mamma to scoop him up. I hurried to my chair as Karl lifted him to my lap, and immediately he pulls at my shirt where the port lives with bandage and said to me, Mamma’s boo-boo go bye-bye, over and over he excitedly speaks, grabbing at my booby, at my wound, just knowing I am here for this, for healing. Hugging me, gentle as a lamb, and excited as toddler can be, he loved me so deeply in that moment and always. I am such a proud mother and in awe of my husband that guided him to me. We couldn’t get out of there fast enough to just be together. In two year old cuteness, he was running around the place saying hello and exploring as we gathered ourselves and headed to dinner and then slumber at dear Kosta’s home, where I am living at the moment. A dear, dearest soul, a dear old friend of my husband’s, we head towards such a home. Milo sleeps so easily in this new place and it comforts my heart.

Our entire time together we loved like this moment, with pain, tiredness and simple colds aside, we played in a magical bed of laughter, family, warmth, and gentle calmness. When they had to leave, I didn’t cry as expected. I was elated by the time together. Renewed by the love of a husband who has grown into the most present father, loving man and soul a woman could want by her side. I am beyond blessed by such a hero. I sat in the car saying goodbye, as Milo said to me, Mamma stays, boo-boo get better. With Kosta, boo-boo gets better. With this, I know that I am supposed to be here, though away from my loves, I have two precious heroes who support and guide this trail.

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Are we really this angry?

My physical body cannot endure the tragedy of today’s news. My emotional mind as a mother cannot fathom the depth of sorrow brought on by today’s events. I tried to not read about the shooting in Connecticut, I tried to look out the window at the snow which always brings a smile and ignore the happenings of the world outside in order to preserve my health, but the reality of life is that it comes with heartbreaks and loves, tragedy and elation. So, I must acknowledge those sweet souls that were lost today in order to live a fair life and to honor the victims. It hurts so deeply to think of the families who are left behind. If my heart hurts this much without knowing who they are, how must they feel?

I don’t think breaking plates will get them through this year intact. I want to ask why, but there is no answer. There is no reasoning to the tragedies that we endure in a world where such anger breeds hatred towards children, diseases that cut to the bone, losses that are unexpected…. I have realized that why is a stupid question. What is the imbalance which creates such a force that destroys the lives of good souls? Has this always happened, or has the magnitude of tragedy grown with the swelling of our population, technology and culture? Will this kind of energy be our demise, the energy that has children killing children?

My husband and I took a weekend away to have a quiet moment in the mountains, away from my doctors, and a break from the baby and now all I want to do is listen to my son breathe as he sleeps and hold him tight in the morning no matter how early he awakes. I realize in this moment, despite what ails me, that I am blessed. It seems that we never do know what will hit us. There is simply not enough compassion to give to those who have lost a child. I am in awe of the strength of those who triumph over such tragedies, with full hearts and billowing memories.

Perhaps the memory of today will assist lawmakers in limiting the amount of rounds one can amass or purchase at Walmart. Perhaps the purpose left behind is to enlighten us to acknowledge why there is so much pain in the living, causing all of this dying.

Shielding realities

There are so many pains to be had with cancer, whether you have it, or feel it within loved ones around you. We wear the illness with either grace or heartache or both and it may be obvious to some how we feel. Though, I wonder as a I carry this cancer, how much do I really share, especially on days like today. Also, why do we feel we must mask our sorrow and doubts, pains and suffering? Should we spare the ones we love or prepare them?

It takes me time to post because I am tired, and I usually do not like to hold back, maybe with the intimacy of my family I maintain a somewhat private front, but I try to be real, and funny, and brazen, and sad and frustrated when it hits me. I am fading in the wings right now and frightened to let everyone know. If I write it or say it out loud, will my courageous roar fade to a whisper?

At some point our reality becomes shielded and those around me hardly see the fear. Tonight, an 8:30 pm unexpected doctors call brings concern. A foreboding tone in his sweet voice, I breathed to the pain and told him that I will do my duty and be at chemo jail tomorrow. I shadowed my tears in the fatigue and sadness for having to miss yet another acupuncture appointment but really my insides were shaking at the idea that I must go to chemo tomorrow for emergency fluids and Zometa because my calcium numbers rose to a new high and my body aches all over. After a year of fighting, why now, does my young skeleton want to break apart from me. We are whole and meant to be together….I don’t feel if I should be breaking down just yet. Miles to go, miles to go before I sleep.

So, why must I cry alone and lie to my mother about my appointments. She doesn’t read this at my request. I still ponder, why the masks, when we wear our cancer upon our head wrapped in turbans, scarves, henna, wigs, and anything that will help make them forget. Perhaps it is my continued request for positivity to surround my world. I can have tears but it is beyond difficult for me to shoulder theirs. I must remind myself the choices I make are focused on healing…hopefully it is the correct decision. I hurt, I’m tired, and scared but I am not letting this define me right now, pushing past miles, praying for decades as always.

Thank you again for the continued luv and support……
This post was inspired by not only my experience, but the thoughts of a fellow cancer mate as well.

a cancer-cation

In our current culture we seem to be fond of the fusing of words. I don’t love this trend. However, at times it is mildly funny. I just had a cancer-cation, ya know, like stay-cation, or like bennifer, or jlo, or whatever.

A cancer vacation should be on the agenda for all of us going through this harried process. It would be nice for one of the several foundations that supposedly assist those with cancer to somehow provide a lavish vacation for healing. I feel blessed to have the family and some resources that gave us this time away. The past 9ish months have been taxing, and while we would have gotten through without this jaunt to sunshine, it was a most welcome and needed rejuvenation. Thank you.

Rejuvenation of the spirit and body is important in life, with or without cancer. We are a distracted culture who shortens words, and forgets to breathe…maybe that is what gives some of us this disease, who knows. Though I am currently not working and have some time (as much time as one can have with a 15 month old) to breathe and heal, it is difficult to meditate on wellness with looming appointments, schedules, and a house to attempt maintenance on, so I needed a cancer-cation. We all did. My family works hard at sustaining this cancer lifestyle, so we took a break from it, barely discussed it aside from the coughing up a lung part that was difficult to ignore, but even still, we rested. I even drank a quarter of a glass of rose cremont!

Walking the tropical paths in the warm sun reminded me to breathe and to live with this unknown future. It is in living that we thrive, I was reminded. For a better part of the last 9 months it felt as if I was just maintaining my existence. Always positive about my future, I still didn’t truly live my life. This past week while watching my son, my family completely enjoy each other, I truly realized the importance of each singular day.

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The 8th of May

It’s already my birthday, and I feel blessed to have one.

Though the thoughts of how many more I will have loom within the celebration of me and my day. I had a lovely time with my family. My sweet son’s voice could be heard by many, singing mama, maamaama, mama, beaming with hugs and love. Watching him simply be, is the perfect gift. And then the mind wanders of how long I get to watch him grow and be? I remind myself that I will have a long life with him, experience all of his adventures, and share smiles.

I briefly think, can I not just have a clear May 8th? A thought free of cancer and my longevity? It was a beautiful day, I have so much love around me and I want to enjoy it without furrowed brow and worry. So, I ordered bonbons by the pool in the hot sunshine of our Hawaiin vacation, knowing that amongst all of this cancer crap, life is still beautiful.

I must remember gratitude. I must remember my smiles and breathe my furrows away.

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